Friday, 14 June 2013

Am I Still Bipolar? Emerging from the Shadow of the DSM

What if it's not our brains
that are the problem?
Photo: Bohlega et al

I am excited. Almost as excited as I was the day the
Berlin wall fell or Nelson Mandela was released from jail. For me, the current
debate around the utility of the DSM5 and psychiatric diagnosis feels that big. It feels that big because I have been personally touched
by a madness from which I was told I would never recover. My only sibling has
likewise lived in the shadows of diagnosis, similarly labelled and without any
real hope for much of his life. I was labelled bipolar 1 and he as schizophrenic.
Of the two labels, I must confess to preferring mine. Bipolar is somehow a bit
sexier than is schizophrenia - in these days of celebrity confession, anyway.

But a quarter of a century ago when I was first given my
diagnosis, I was a manic depressive and there didn't seem much that was glamorous
about that. Celebrities did not then come out of the closet and admit to their
diagnoses or discuss their trials in Hello. It was only historical geniuses
like Virginia Woolf and Hemingway who were found on lists of the similarly
afflicted. And that was only because they were dead.

Admittedly I was more fortunate than most. As a writer,
people chalked up my creativity and productivity to my 'illness' and I was
forgiven some of my foibles. Editors still liked my work, not always realising
that some of it was produced in a haze of lithium and sometimes from within the
confines of a psych ward. It sold, nonetheless.

So why am I excited? I'm excited by the fuss over the
DSM and by the breathtaking possibilities within the charge that psychiatric
diagnoses lack validity. If mental illness is not primarily caused by biology I’m
left wondering if I'm a fairly normal person after all? What if I'm someone who
was extremely distressed at times or someone who just has bigger moods than
most? That seems a bit like saying that some people tan more easily in the sun
than others. And so what if they do?

It might mean that my family was like many other
families, except that we were stressed. Most of us were distressed and two of
us got labels. Certainly the criss-cross double-bind communication within my
family could have driven anybody mad. Perhaps, more tellingly, we couldn't talk
about our distress and it had to be hidden. Well-functioning middle class
people weren’t expected to behave that way. While our genes may have made
'madness' more likely is that really so bad?

If psychologists are right that the primary causes of
mental illness are psychosocial rather than biological, my family narrative can
be re-written. We can emerge from our closets of shame and take our rightful
place on the continuum of acceptable human experience.

That possibility feels good, but it can’t erase the fact
that my family has been shamed and defamed by psychiatric diagnosis. Our lives,
historical and present, are forever affected by it. We have felt different. We
have felt defective and unacceptable. We felt that our genes were inadequate
and shouldn't be reproduced. We felt that our diagnoses had to be hidden
because others might think us dangerous or unpredictable. At times, we felt so
'other' that we had to hide our experiences even from one another. We lived
with secrets and silence that reached into every corner of our lives.

Our communications were difficult and inauthentic as a
result. My parents would bring me gifts when I was in hospital and take great
care to ensure that I had all that I needed. My long-suffering husband was
chastised by my mother for not 'doing enough'. We would speak about everything
bar the fact of my being there. Neither parent ever breathed the words of my
diagnosis to me. We discussed the weather, interest rates, the neighbour's
dog... Everything but the reason why I was periodically unable to function.
That both their children were 'mental patients' was a deep source of shame and
guilt.

Both my parents died before the dawn of this new era of
DSM deconstruction. They died believing that they had brought deficient
children into the world. They died believing that they were fundamentally
flawed, perhaps even irresponsible in becoming parents. When they were here, I
tried to tell them that it wasn't their fault: that none of us could have
predicted our fate.

It was never enough. Psychiatry was too powerful and our
insecurities intertwined with its diagnostic labels to keep us locked into our
shameful dance. Neither my brother nor myself was given any hope of
recovery. We were told that our illnesses were incurable, that we could
expect to live lives of pain and disability. To some extent, we have. But if we
have been unable to re-write our diagnoses, our prognoses were more within our
control. My brother has gone on to make a functional recovery, while I have
remained medication-free for the past thirteen years. I no longer identify with
the label 'Bipolar'.

Backed by Big Pharma, powerful careers have been
fashioned from the biological theories. Psychiatry, embarrassed though it may
be by its failings, will not easily loosen its monopoly on the meaning of
mental illness. But it's labels can have no lasting meaning for those
determined to recover and live the best lives that they can. That is where the
real power lies - and it's possibilities must be snatched up whenever and
wherever possible.

8 comments:

It is confusing what's going on right now. Especially if you've been personally touched by mental illness. I've been thinking of it as vulnerability plus. Or something like that. Being vulnerable then having circumstances that make it worse.

I found this post really interesting and relevant, particularly as it is from the viewpoint of someone who has been given these labels in the past. We are debating similar issues in Powys at the moment (medicalisation of everyday life etc), and one of my colleagues told me about the Skeptics in the pub sessions in Lewes which is how I found this blog. I like the analogy "some people tan more easily in the sun than others."

What a heartbreaking situation for a family. Medics very glibly apply the labels but I don't think much thought is given to how they actually impact on people's lives. We keep reading about the stigma of mental illness and how much better things are today than in the past. This might be true to some extent, but I also think it's somewhat illusory. The fact that people are talking more openly about their diagnoses doesn't necessarily mean that they're less discriminated against. What is in the law is one thing, but we really need to change hearts and minds.

Whether biological causes are more shaming/stigmatising than psychological causes is a matter of perspective. One could argue that "defective genes" are out of anyone's control, whereas psychological stress is a product of, for example, "bad parenting", laying the blame on apparently free-willed behaviour (but what caused that?).

Surely the point is that biological, psychological, and social factors all play a part. In each individual, that part played will vary (we know that, very rarely, single gene mutations cause a genetic form of schizophrenia, but we also know, for example, that ethnic minorities experience higher prevalences of schizophrenia when they are a minority, but not in their country of origin. Meaning in that example social factors are more important than inheritance. Overall, in the case of schizophrenia, the variation accounted for by genetics is about 50%. You can show this by looking at identical twins who were separated at birth. It's very simple, robust piece of science.)

Ultimately, the distinctions between biology, psychology, and sociology are merely practical conventions of scale -- reality isn't cut up into pieces or theories, it's one big humming symphony with multiple levels of organisation, in the wet matter of the brain, in how we experience our thoughts, and so on.

The tanning analogy seems particularly badly chosen given that propensity to tan is biologically determined.

Ultimately, the blame-game is a fruitless exercise. It doesn't matter what particular contribution biological, psychological or social factors made in any particular case, and how would you quantify them anyway? The point is that, deep down, we all want to be happy, and in our own way, with our own limitations, we try our best. That is a source of compassion.

I take the point of the writer above that these issues are a matter of perspective. I know that there are many service-users who find it helpful to have a label. In fact, I think I found it helpful at first as it gave a name to my difficult experiences. Getting rid of it has been less easy, though, and the impact of it within my family has been colossal. Ironically, the analogy with some being able to tan more easily in the sun than others was made deliberately, because it is biological. No-one would bother to point out such a difference, but if there is a slight difference in the way your nervous and endocrine systems are wired, it's considered very important.

- 'Modern psychiatry — with its Diagnostic and Statistical Manuals of non-existing diseases and their coercive cures — is a monument to quackery on a scale undreamed of in the annals of medicine.' -Thomas Szaz

-“The problem with psychiatric diagnoses is not that they are meaningless, but that they may be, and often are, swung as semantic blackjacks: cracking the subject’s dignity and respectability destroys him just as effectively as cracking his skull. The difference is that the man who wields a blackjack is recognized by everyone as a thug, but one who wields a psychiatric diagnosis is not.” – Thomas Szasz

” We are also survivors of one of the meanest systems of oppression ever developed and its victims and its critics. We are the ones to tell the truth that mental illness is an illusion, intellectually and scientifically, but also a system of social control of unprecedented thoroughness and persuasiveness. It is our role to expose this illusion and to free us all – for we are the constrained, oppressed. limited by this phantom of mental illness. We stand with reason against error and superstition, with imagination against conformity and oppression. What good luck to be part of such a good struggle for freedom and human rights.” Kate Millet

‘Modern’ psychiatrists are no more legitimate as psychotherapists than German psychiatrists of the 1930s who brought the world their version of eugenics, involuntary sterilization, mass ‘euthanasia’, and their further contribution to the Holocaust and WW2. This contemporary ‘bio’-psychiatry should have been outlawed and banned from the medical profession at the Nuremberg trials following the War- American psychiatry reportedly came to the rescue of their German counterparts for the protection of their 'profession', and continue to perpetrate their inhumanity and false thesis (in different guises)in the USA and world wide, with the assistance of the pharmaceutical giants and big government. Today's psychiatrist is no more qualified in ‘psycho-therapy’ than your plumber or garbage collector by virtue of their ‘education’ and indoctrination in psychiatry! -jim keiser https://www.facebook.com/pages/Mental-healthpsychiatric-watchdog-reform-activity/170568593024064

I know such views are deeply felt Jim. I'm not always sure where they take us though. While I personally am very uncomfortable with diagnoses (for reasons of validity, reliability and location of the problem in the individual) there are issues that weigh on the other side. In some senses a diagnostic labels can also take us to a more compassionate place compared to some of the alternatives (judgements of moral weakness etc.). There are many people who are very attached to their diagnosis and experience is as a validation of something important about their experience. There is also the issue, far from negligible, that we operate in a system where such labels aren't going to disappear in a hurry and there is a need to think about how we come up with a compassionate and helpful response to others within that. Myself and a colleague have recently been giving some presentations to try and outline these issues for a general audience. There is a kind of audio slide show (also available on this site) which may be of interest. http://discursiveoftunbridgewells.blogspot.co.uk/2013/09/is-life-disease.html. John McGowan

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The Salomons Centre for Applied Psychology in Tunbridge Wells, England. We are part of the Canterbury Christ church University Department of Psychology, Politics and Sociology. We run training courses in Clinical Psychology and CBT and also practice improvement programmes for child and adolescent mental health services. On this site staff and trainees in the Department write about a wide range of issues related to applied psychology, psychological therapies, policy and health service development.